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Second Year (April 2019-20)
"Life itself is a privilege, but to live to the fullest-well that is a choice."
by Andy Andrews
Wow, it was hard to believe a whole year had passed, and at the same time, it seemed like forever--and it was overwhelming to think of all the hard work ahead of us. Frequently, I report that Matt is talking better--true, but you have to keep it in perspective. If I rated his speech and language ability when he was discharged home in September on a 0-10 scale, he was a 1.0. Now, his score might be 1.5. Better, yes, but a long way to go.
We hosted a Celebration of Life party on April 12, 2019. Seeing and hearing Matt talk and interacting with the people gathered in his honor was so encouraging. It was a blessing to witness how attentive he was to various conversations within the room, mingling with people and partaking in the conversation. It was a massive accomplishment for Matt to interact and converse with people he did not know well and not to get tongue-tied or need Mike and me to be constantly at his side to facilitate or interpret for him. Everyone was astounded to see how far he had come in one year.
To help Matt reconnect with people from his “previous life,” as well as those who have aided in his recovery since his stroke, we made several road trips. In Easton, PA, we made multiple stops at St. Luke’s intensive care unit staff, Lafayette College, College Hill Presbyterian Church, and his game group. In Ithaca, NY, we spent time with Dave and his wife, MaryAnn, and visited Cornell University. We also visited the nursing staff and therapists at Sunnyview Rehab Hospital. Everyone was so happy to see his progress, especially his communication ability. People remembered when he couldn’t talk or barely said a word. Now, to some degree, they could hold a conversation, even if it still involved a lot of yes/no questions. At moments like this, I was acutely aware of just how far Matt had come. I recalled the then and now and thanked God.
As I mentioned, we cheered when Matt first came home because he could answer yes/no questions. Later, when given choices, he could say whether he wanted the first or second option (E.g., “Do you want pancakes or eggs for breakfast.” --“Option one.”) As much as we prompted him to say the actual name—say, pancakes, he wasn’t able to do this for a long time. We also encouraged Matt to speak in full sentences— “I would like pancakes,” and later to remember what he had eaten for breakfast. We asked Matt to use a deep voice rather than a falsetto or high voice. His attempts weren’t always successful—and sometimes were quite funny. Fortunately, he had a good sense of humor and didn’t get mad when we laughed.
Initiating and maintaining a conversation was extremely difficult. It was often challenging to hear and understand Matt. I noted that fact in my journal on four separate occasions over the coming year. Typically, we asked Matt questions or started the discussion. Asking open-ended questions or suggesting a topic for him to expand upon encouraged him to talk more. For example, “Talk about something you see in our backyard,” to which Matt identified Ryan’s old tree fort and reminisced about all the fun kids had playing on the zip line. We learned that Matt did better when the conversation focused on something he was passionate about, such as his dancing career or computer engineering. He commented that it was also easier to talk about a subject if it was part of a natural conversation rather than in response to a specific question that might cause him to get tongue-tied. We appreciated the random moments when we held a natural give-and-take exchange.
Writing was next on the list. Matt practiced printing letters and words that sounded alike: hat, bat, cat, etc. Each day, I started him off by printing one word as an example and asking him to generate a list—which initially met with a blank stare. It took weeks of practice before he could list two or three out of a potential of ten possible words.
Long ago, Matt’s PopPop introduced our children to the saying, “Shave and a haircut, two bits.” We took to rapping the first part of the tune on the kitchen wall to the person on the other side taking a shower, or vice versa. The person on the receiving end finished the ending. I rapped from the kitchen wall for several weeks, but Matt did not respond. When he finally tapped back to me, I smiled. It was just one more way to communicate, share a memory, and express our love.
Our daughter, Megan, married her fiancée Ben on September 7, 2019. I associate three shining moments with this event. Several couples spent the night at our nearby family cottage after their bachelor/bachelorette gathering in the Thousand Islands. Sitting on the deck, we played Disney Trivia, a family favorite growing up. In quick order, everyone realized Matt was the resident expert on animated Disney movie releases. Despite best efforts, the group was hard-pressed to stump him, whether on recent or older movies.
Secondly, at the wedding, Matt read a scripture verse during the wedding ceremony and then--to everyone’s surprise--gave a short speech at the reception. He spoke clearly and loudly.
The place was dead silent until the rousing applause when he said he intended to dance the night away. Many people teared up or openly cried, like his sister. Mike and Matt wrote and practiced the speech and his delivery for six weeks. Speech therapy joined in the preparation by focusing on fluency and intonation to polish it off. It was indeed memorable.
Matt started a journal of daily activities. His first entries focused on his sister’s wedding. He wrote very slowly because he had to sound out nearly every word, identify each letter verbally, figure out its symbol, and then write it down. He would write a certain letter correctly five times in a row and randomly guess the sixth. We used his journal entries to trigger his short-term memory and recall of details.
In October, Matt started attending a Brain Training group led by Kathy Johnson. Her expertise in special education and cognitive retraining was a God-sent. Kathy quickly identified a few strengths to build on. For example, when speaking, if Matt couldn’t come up with a word, he would stop and go through the alphabet until he got to the first letter of the desired word, and then he could say it.
She also identified areas of greatest need, such as it was far more difficult for Matt to recognize and say letters than numbers and more so still to switch between the two. Identifying objects and animals was nigh impossible. Being part of a group was a new and challenging experience as well. It highlighted how difficult it was for him to converse with strangers. Despite Matt’s recent accomplishments, these interactions highlighted how far he still had to go to be fluent outside of the home (rating = 1.5 with strangers, 2.0 with family).
On the home front, he could express himself better and more frequently during our weekly family Google chats. It wasn’t easy for him to get a word in edgewise. This required composing his thoughts and speaking up fast enough to interject his opinions in the briefest of lulls before someone else went off on another tangent--no small task, but he managed—sometimes.
We introduced text messaging a year and a half into his recovery. He had little idea what to say or how to compose a sentence. Together, we would script a one-sentence response, write it down, and practice it. Matt would grip the phone tightly in front of his mouth as he spoke slowly and methodically, word by word, needing prompts and often multiple takes to get it right. His comments were brief, with little social engagement. He couldn’t follow up on a before-mentioned medical problem or an upcoming event, nor did it occur to him to look for a response to his messages.
Two months after Megan’s wedding, his Aunt Debbie, grandparents, high school friends, and Kathy commented that he spoke louder, with better vocabulary, enunciation, and eye contact. At a dinner gathering I hosted in a familiar environment, his interactions with my friends were on par with our family chats. He even used a compound (if/then) sentence in a conversation. Kathy frequently praised Matt because he worked harder than anyone in her prior experience. All these accolades fueled Matt’s resolve to keep fighting the good fight.
As we finished the second year of recovery, we tackled an atypical approach to reading. Reading Reflex used phono-graphixs rather than traditional phonics. Its basic premise is that auditory sounds come first, and letters are visual symbols to represent those sounds. Not the other way around. There are 52 sounds represented by one or more letters. There are no complicated exceptions to the rules, such as “i” before “e” except after “c”. This program could help with reading and the development of the language center in his brain that was damaged by his brain injury. It was just one more strategy in our toolbox to help Matt get better, just not then. Matt couldn’t do it, and since it became a bone of contention and strife, we tabled it.